Recent eLetters

Sir, in Nottingham, we have been operating a similar system to Fraser et al (1), for person specific planning for children with life limiting conditions since 2004. We have presented it at several national and international meetings (2-7).

Our system has 2 parts. The first part is the personal resuscitation plan (PRP) which describes in detail the interventions which are appropriate in the event of deterioration, whether sudden or gradual and considers the preferred place of death. This is a medical care plan and must be signed by the child's consultant. The second part of our tool kit is the 'wishes and choices' document which details the family choices regarding organ and tissue donation, post mortem and arrangements for care of the body after death. These two documents together make up the child's 'end of life' care plan, but unlike the authors we have found it important to approach families with them separately.

The PRP is a detailed emergency care plan which gives background information about the child's condition, plus symptoms and signs which would indicate deterioration as well as the specific interventions which are appropriate. This makes it relatively easy for the paediatrician to introduce to parents and carers of children with severe neurodisability, whether static or degenerative as soon as the child is having or is at risk of having life threatening events such as air way problems, chest infections, or prolonged seizures. It can be presented as a positive plan of best care, rather than dwelling on the plan for the child's death.

Our experience has been that families are keen to have an emergency care / resuscitation plan that promotes early and appropriate low level treatment and avoids inappropriate and invasive interventions, long before they are ready to discuss tissue donation and funeral arrangements. However making the PRP starts the conversations about what may happen and what choices are available, including the preferred place of death, and who can be there to provide support.

Feedback from local focus groups with hospital and community staff has emphasised the importance that the resuscitation plan is a medical care plan developed with the family and the care team, and family held, but signed as appropriate care by the child's consultant paediatrician. It then replaces the 'do not attempt resuscitation' form and will be followed by emergency services including ambulance staff.

Evaluation in 2006 showed that 19 out of 24 children on the community nurse case load with life limiting conditions had a plan and a prospective study in this same group of children showed that the plan was available and followed in 10 out of 11 emergency events, including seven deaths, with no admissions to the paediatric intensive care unit. Feedback from professionals and parents was that PRPs are useful and empowering.

PRPs do not time expire, but as the child's condition changes the resuscitation plan may need to change, and so must all copies. In our system the distribution list is part of the plan itself and the plan clearly states 'do not photocopy'.

We have found that while families are glad to keep the resuscitation plan with the child at all times and have copies widely distributed, they prefer not to carry around the 'wishes and choices' document, but to keep it more privately.

The Nottingham 'Personal Resuscitation Plan' and 'Wishes and Choices' templates can be found in Pfund and Fowler-Kerry (8).

References:

1. Fraser J, Harris N, Berringer AJ, Prescott H, Finlay F. Advanced care planning in children with life-limiting conditions- the Wishes Document. Archives of Disease in Childhood 2010: 95; 79-82.

2. Wolff A, Browne J, Whitehouse WP. Development of personal resuscitation plans instead of 'do not resuscitate' orders for children with life-limiting conditions. Developmental Medicine & Child Neurology 2004: 46; Suppl 100; 45.

3. Wolff A, Browne J, Whitehouse WP. Personal Resuscitation Plans: the death of DNARs? Archives of Disease in Childhood 2005: 90; Suppl 11; A78.

4. Wolff A, Hollingsworth S, Crawford C, Whitehouse WP. Use of personal resuscitation plans in children with life limiting conditions. Archives of Disease in Childhood 2006: 91; Suppl 1; A83.

5. Wolff A, Hollingsworth S, Crawford C, Whitehouse WP. Personal resuscitation plans in children with life-limiting conditions. Developmental Medicine & Child Neurology 2006: 48; Suppl 106; 51.

6. Wolff A, Hollingsworth S, Whitehouse W. Clinical usefulness of personal resuscitation plans in children with neurodisabilities and life- limiting conditions. Archives of Disease in Childhood 2007: 92 Suppl 1: A56.

7. Wolff T. Whitehouse W. the death of DNR: personal resuscitation plans. British Medical Journal 2009: 338; 1227.

8. Pfund R and Fowler-Kerry S. 2010. Perspectives on palliative care for children and young people - a global discourse. Radcliffe Publishing, Oxford.

Conflict of Interest:

None declared

A major finding of this study was: "Infants with dual infections (RSV and hBoV) had a higher clinical severity score and more days of hospitalisation"

In our hospital, and many others round the world, babies with RSV infection are nursed in a room together and are not tested for Bocavirus. Should this practice now stop to prevent Bocavirus crossinfection increasing morbidity?

Conflict of Interest:

None declared

We feel Dr Markovitch (1) was over critical of Hilton et al (2). Although we agree that there was a paucity of evidence to allow them to rebut Dr Wakefield’s suggestion that MMR could in some children cause autism, we believe that they still could have been clearer in reporting the full situation. The suggestion that the MMR vaccine should be given as its separate components came, not from a scientific paper, but as an announcement by a single researcher at a press conference. Within a month of the publication of the Lancet paper, a number of authors of the paper re-emphasised the importance of the combined MMR vaccine and that they had not proven a link between it and autism (3). It is these facts that should have been more strongly communicated, thus allowing people to attach the appropriate level of credence to Dr Wakefield’s views. If editors of journals had made more of this, healthcare professionals might have been better equipped for their discussions with parents.

We agree with Dr Markovitch that “…..they [editors] should offer honest accounts of best practice couched in language that generalist health care professional readers and the non-scientists writing for the public media can understand.” However, they should include all the relevant details including a balance that is truly reflective of the scientific evidence. The individual health professional is often unable to review the evidence themselves, through lack of time or access to the relevant material, and relies on journals such as those critiqued by Hilton et al to provide the information in a full but concise manner. Although this approach may not make for earth shattering headlines, it is responsible. We don’t suggest that editors should be censorious but it behoves them to couch unsubstantiated hypotheses in an appropriately cautious manner.

1. Markovitch H. Editors should not be propagandists. Arch Dis Child 2009; 94: 827-8. 2. Hilton S, Hunt K, Langan M, Hamilton V, Petticrew M. Reporting of MMR evidence in professional publications: 1988-2007. Arch Dis Child 2009; 94: 831-3. 3. Murch S, Thompson M, Walker-Smith J. Autism, inflammatory bowel disease and MMR vaccine. Lancet 1998; 351: 908.

I was interested to read Govindaraj et al’s audit showing a fall in the number of MMR vaccines given in their hospital over the last 2 years. Unfortunately there was no data to show what happened to those children initially referred to hospital for MMR, but referred back by the outpatient sister.

A study from New Zealand suggests that children inappropriately referred for MMR in hospital can be referred back and subsequently immunised in primary care [1]. However this was not our experience in Liverpool where 22 children, who had been advised by a health professional to have MMR in the community, were still referred to hospital [2]. This request for immunisation in hospital came from both primary care staff and parents.

It is important to ensure that children referred for MMR in hospital, but referred back to primary care, are subsequently immunised. Does Dr Govindaraj have any data to reassure us that the fall in the number of MMR vaccines given in their hospital is not due to children being left unimmunised in the community?

1. Goodyear-Smith F, Wong F, Petousis-Harris H, Wilson E, Turner N. Follow-up of MMR vaccination status in children referred to a pediatric immunization clinic on account of egg allergy. Human Vaccines.2005: 1:118- 22 2. Ainsworth E, Debenham P, Carrol ED, Riordan FAI. Referrals for MMR immunisation in hospital. Arch Dis Child 2009 (in press)

We were interested to read the paper by Jones at al1 on ‘Frequent medical absences in secondary school students’. They conclude that ‘this study should prompt education departments and their NHS partners to look more critically at the problem … and to establish a system that provides more comprehensive assessment and treatment.’

Within Bolton PCT such a system has been designed in order to identify causes of frequent medical absences from school and to provide interventions aimed at supporting students to achieve an earlier and consistent return to school. Originally in Bolton (from the year 2000) referrals were made by the Education Social Work Department to a Senior Clinical Medical officer to undertake medicals on children with poor school attendance reported as due to ill health. This provided evidence to support an identified medical problem or for the LEA to issue a fixed penalties notice to the parent or carer. Since the issue of school attendance subsequently became a high priority policy concern for both the DfES and the DoH this service was re structured to develop an innovative Advanced Nursing Practitioner (with a school nursing background) led model for the evaluation of health issues for children and young people with poor school attendance. The main focus of the model was to enhance joint working between the advanced practitioner, Education Social Worker, schools and families. Changes have included a standardised threshold for referral (when attendance falls to 80%), agreed minimum information sets on referrals, agreed time frames for assessments and production of correspondence, holistic assessment, onward referrals, investigations and reintegration programmes to aide full return to school.

Over the last academic year 251 new referrals were received form the Education Social Work department (previously 55 a year). There were two peaks of referral (December 51, April 40). There were 120 referrals from primary schools and 131 for secondary schools. Referrals included 122 boys and 129 girls. Referrals to the service from 18 individual education social workers varied from 1 - 41 (median 14). The main causes of school absence were asthma, recurrent URTI, headache, sore throat, menstruation problems, chronic fatigue, skin problems, emotional and behavioural problems and inadequate provision for special needs within school. A variety of onward referrals were made including ENT, community paediatrics, dietetics, Young Carers, social care, occupational care, physiotherapy, CAMHs and two admissions to hospital. Support packages of care have been initiated for some together with supported reintegration plans to enable the young person to return to regular school attendance. Pathways are being devised for young people identified with ‘school phobia’ (jointly with CAMHs) and also a menstruation pathway for girls presenting with complex menstrual history.

In all cases of non attendance it is essential that preventative and early intervention should be seen as the cornerstone of multiagency working in order to ensure pupils right to education and to protect their health and well being. The redesigned service in Bolton has made good progress towards achieving these aims.

Reference 1.Jones R, Hoare P, Elton R, Dunhill Z, Sharpe M. Frequent medical absences in secondary school students: survey and case control study. Arch Dis Child 2009;94:763-767